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Re: Re: Sunny's Update

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Sunny,

I am way way behind reading posts and just got to yours. This disease affects all of us so differently but my body reacts like yours. My lung scarring is all at the top of my lungs , not at the bottom like everyone else's and I am not sure if that's what makes the different reactions, but like you my heart rate goes way up long before my sats drop. I had a hard time getting the doctor to prescribe oxygen because I never went below 93% on the six minute test , but my heart rate would hit 200! He finally prescribed oxygen when I did a 12 minute test and I dropped to 88%. He could see how shaky and pale I got after walking for that long at a slow pace.

Without the oxygen, a small walk puts me over 140 and singing a song gets me up to 200 real quick. I now use oxygen based on my heart rate more than my O2 rate. With any activity that makes my heart rate rise, walking, exercising, singing at church, etc., I up the oxygen until my heart rate returns to normal ( 95 to 115). Also I get dizzy before I get out of breath- I think it is connected to the high heart rate but I am not sure. R. (53) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Sunny's UpdateTo: Breathe-Support Date: Friday, April 10, 2009, 10:51 PM

SunnyAfter a six minute walk at reasonably high speed you didn't drop below91%?Regardless you definitely need oxygen for sleep. Also your questionabout heart rate and enlarged right side of the heart is most concerningas if your pulmonologist has seen your pulse rate and expressed thatconcern, why hasn't he ordered tests? When was your last echocardiogram?And if you tell me no time recently, then I'm telling you yourpulmonologist is leaving something to be desired. Now, with that kind ofpulse from light activity, I suspect some would skip the echo and gostraight to a heart catheter to check pressure, but at any rate, I justdon't understand him bringing the whole issue up but not ordering tests.>> Well, Monday I am having a lung

biopsy. Went to the pulmo doc onTuesday and immediately scheduled it so that kind of freaked me out. Still says I only have 40% lung capacity. GI doc and Pulmo doc bothagree that the scarring is probably from having acid reflux so bad andso long. I have been breathing in stomach acid especially at night. That is there theory anyway. Had an overnight oxygen monitoring testWednesday. I woke up a couple of times during the night and looked atthe numbers. Not good as far as I am concerned. Sometimes it dropped to81% but I know a lot of you have seen and are dealing with much worse. At the Pulmo doc they only got it to drop to 91% and my insurance won'tcover oxygen until it's 90% or below. What bull! I think I would feelbetter if they would just put me on oxygen. I am sure they will atnight now but I think daytime oxygen would be a big help too. Anyway,that's what is up with me. Appreciate prayers sent my

way.>> Sunny, IPF 09, Idaho>

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Sorry, I haven't responded until today but have been going through major depression. I used to be quite good at singing songs and hymns but can't do it anymore. I just run out of air. Like you my heart rate kicks my backside before my oxygen drops. Just a short walk and it shoots through the roof. If I bend over and stand up to suddenly I almost pass out. My vision gets dark and I get dizzy. I am getting frustrated! I have so many other diseases to deal with that I just wish they would prescribe the O2 and get it over with. My lung biopsy was last Monday and today they tell me I have to come see the doctor to get the results. What hogwash! I am a big girl and I can take it. Also they are very concerned that in 10 weeks I dropped from 220 to 170lbs and no one knows why. Anyone out there have a clue. I haven't changed my routine except my appetite seems to have disappeared but I still do eat at least four small meals a day because if I don't I get blocked bowel due to adhesions. Anyway they just put me on prozac because of the depression. I think some straight answers would be better than meds. Sorry to vent! And would someone send me detailed instructions on how to put my signature on the bottom so I don't have to do it every time as I usually mess it up.

Sunny IPF 09 Idaho

From: denise randel

Sent: Wednesday, April 15, 2009 5:41 PM

To: Breathe-Support

Subject: Re: Re: Sunny's Update

Sunny,

I am way way behind reading posts and just got to yours. This disease affects all of us so differently but my body reacts like yours. My lung scarring is all at the top of my lungs , not at the bottom like everyone else's and I am not sure if that's what makes the different reactions, but like you my heart rate goes way up long before my sats drop. I had a hard time getting the doctor to prescribe oxygen because I never went below 93% on the six minute test , but my heart rate would hit 200! He finally prescribed oxygen when I did a 12 minute test and I dropped to 88%. He could see how shaky and pale I got after walking for that long at a slow pace.

Without the oxygen, a small walk puts me over 140 and singing a song gets me up to 200 real quick. I now use oxygen based on my heart rate more than my O2 rate. With any activity that makes my heart rate rise, walking, exercising, singing at church, etc., I up the oxygen until my heart rate returns to normal ( 95 to 115). Also I get dizzy before I get out of breath- I think it is connected to the high heart rate but I am not sure. R. (53) Sarcoid/PF 3/2006 Carlsbad, California

From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Sunny's UpdateTo: Breathe-Support Date: Friday, April 10, 2009, 10:51 PM

SunnyAfter a six minute walk at reasonably high speed you didn't drop below91%?Regardless you definitely need oxygen for sleep. Also your questionabout heart rate and enlarged right side of the heart is most concerningas if your pulmonologist has seen your pulse rate and expressed thatconcern, why hasn't he ordered tests? When was your last echocardiogram?And if you tell me no time recently, then I'm telling you yourpulmonologist is leaving something to be desired. Now, with that kind ofpulse from light activity, I suspect some would skip the echo and gostraight to a heart catheter to check pressure, but at any rate, I justdon't understand him bringing the whole issue up but not ordering tests.>> Well, Monday I am having a lung biopsy. Went to the pulmo doc onTuesday and immediately scheduled it so that kind of freaked me out. Still says I only have 40% lung capacity. GI doc and Pulmo doc bothagree that the scarring is probably from having acid reflux so bad andso long. I have been breathing in stomach acid especially at night. That is there theory anyway. Had an overnight oxygen monitoring testWednesday. I woke up a couple of times during the night and looked atthe numbers. Not good as far as I am concerned. Sometimes it dropped to81% but I know a lot of you have seen and are dealing with much worse. At the Pulmo doc they only got it to drop to 91% and my insurance won'tcover oxygen until it's 90% or below. What bull! I think I would feelbetter if they would just put me on oxygen. I am sure they will atnight now but I think daytime oxygen would be a big help too. Anyway,that's what is up with me. Appreciate prayers sent my way.>> Sunny, IPF 09, Idaho>

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Sorry, I haven't responded until today but have been going through major depression. I used to be quite good at singing songs and hymns but can't do it anymore. I just run out of air. Like you my heart rate kicks my backside before my oxygen drops. Just a short walk and it shoots through the roof. If I bend over and stand up to suddenly I almost pass out. My vision gets dark and I get dizzy. I am getting frustrated! I have so many other diseases to deal with that I just wish they would prescribe the O2 and get it over with. My lung biopsy was last Monday and today they tell me I have to come see the doctor to get the results. What hogwash! I am a big girl and I can take it. Also they are very concerned that in 10 weeks I dropped from 220 to 170lbs and no one knows why. Anyone out there have a clue. I haven't changed my routine except my appetite seems to have disappeared but I still do eat at least four small meals a day because if I don't I get blocked bowel due to adhesions. Anyway they just put me on prozac because of the depression. I think some straight answers would be better than meds. Sorry to vent! And would someone send me detailed instructions on how to put my signature on the bottom so I don't have to do it every time as I usually mess it up.

Sunny IPF 09 Idaho

From: denise randel

Sent: Wednesday, April 15, 2009 5:41 PM

To: Breathe-Support

Subject: Re: Re: Sunny's Update

Sunny,

I am way way behind reading posts and just got to yours. This disease affects all of us so differently but my body reacts like yours. My lung scarring is all at the top of my lungs , not at the bottom like everyone else's and I am not sure if that's what makes the different reactions, but like you my heart rate goes way up long before my sats drop. I had a hard time getting the doctor to prescribe oxygen because I never went below 93% on the six minute test , but my heart rate would hit 200! He finally prescribed oxygen when I did a 12 minute test and I dropped to 88%. He could see how shaky and pale I got after walking for that long at a slow pace.

Without the oxygen, a small walk puts me over 140 and singing a song gets me up to 200 real quick. I now use oxygen based on my heart rate more than my O2 rate. With any activity that makes my heart rate rise, walking, exercising, singing at church, etc., I up the oxygen until my heart rate returns to normal ( 95 to 115). Also I get dizzy before I get out of breath- I think it is connected to the high heart rate but I am not sure. R. (53) Sarcoid/PF 3/2006 Carlsbad, California

From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Sunny's UpdateTo: Breathe-Support Date: Friday, April 10, 2009, 10:51 PM

SunnyAfter a six minute walk at reasonably high speed you didn't drop below91%?Regardless you definitely need oxygen for sleep. Also your questionabout heart rate and enlarged right side of the heart is most concerningas if your pulmonologist has seen your pulse rate and expressed thatconcern, why hasn't he ordered tests? When was your last echocardiogram?And if you tell me no time recently, then I'm telling you yourpulmonologist is leaving something to be desired. Now, with that kind ofpulse from light activity, I suspect some would skip the echo and gostraight to a heart catheter to check pressure, but at any rate, I justdon't understand him bringing the whole issue up but not ordering tests.>> Well, Monday I am having a lung biopsy. Went to the pulmo doc onTuesday and immediately scheduled it so that kind of freaked me out. Still says I only have 40% lung capacity. GI doc and Pulmo doc bothagree that the scarring is probably from having acid reflux so bad andso long. I have been breathing in stomach acid especially at night. That is there theory anyway. Had an overnight oxygen monitoring testWednesday. I woke up a couple of times during the night and looked atthe numbers. Not good as far as I am concerned. Sometimes it dropped to81% but I know a lot of you have seen and are dealing with much worse. At the Pulmo doc they only got it to drop to 91% and my insurance won'tcover oxygen until it's 90% or below. What bull! I think I would feelbetter if they would just put me on oxygen. I am sure they will atnight now but I think daytime oxygen would be a big help too. Anyway,that's what is up with me. Appreciate prayers sent my way.>> Sunny, IPF 09, Idaho>

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